Finding answers amid the prostate cancer confusion

Richard Tayson has prostate cancer. How he’s been living with it for nine years says a lot about the state of the disease today.

The author and professor of poetry at New School University in New York City went to his primary-care physician at age 44 for a routine checkup, including a digital rectal exam. When the doctor felt something abnormal, Tayson had a biopsy and was told he needed immediate surgery to remove his prostate.

“You hear the word cancer … I panicked,” he said, but he refused the operation. Instead, he embarked on a regimen of regular testing, physical exercise, a careful diet, meditation and constant research into the cancer with which one out of seven American men will be diagnosed.

He had a PSA test, the common diagnostic tool for prostate cancer, but it is imperfect and controversial. Some experts believe that the test’s risks of harm, either from accurate results unleashing unnecessary treatment or from frequent inaccurate results, outweigh the benefits. Tayson’s level of the prostate-specific antigen protein was 0.76, way below the 4 to 5 that is considered a warning because cancerous cells make more PSA, or prostate-specific antigen, than benign cells.

“The biopsy was very invasive. I should have just tracked my PSA over time,” he said.

Knowing that aggressive treatment could mean urinary incontinence or erectile dysfunction, he found new doctors when those advocating surgery told him, “You can’t make love if you’re dead.”

“It’s a terrible decision to make; you feel doomed no matter what you do,” Tayson said. “I’m walking around with cancer cells, but I’m handling it. If I make the wrong decision, I’m willing to live – or die – with it because I’m taking control of my situation.”

That’s just what the American Urological Association and the American Cancer Society, among other groups, want to see: informed men who get tested for prostate cancer and then carefully consider their options if signs point to disease. Both groups concede that men were overdiagnosed and overtreated when PSA screening was newer. That overtreatment gave rise to a kind of no-testing backlash and cynicism over whether the real motive was making money. Nevertheless, there is a danger.

Following lung cancer, prostate cancer “is the second leading cause of cancer death in men,” said Jeffrey Karnes, a urologist with the Mayo Clinic in Rochester, Minn., with 27,540 deaths estimated for 2015. “There is overtreatment, and we’re mindful of that. But I can’t say men should bury their heads in the sand and not get screened.”

Dr. Durado Brooks, the American Cancer Society’s director of prostate and colorectal cancers, said that although the case for screening is not as clear cut for prostate cancer as for breast cancer, there is a “higher likelihood” of decreased mortality in men diagnosed in the initial stages of the disease. Catching it early and better treatments are why, he said.

“Men should learn everything they can about the risks and harms and make a decision based on their values and preferences,” Brooks said.

Compounding the confusion was a 2012 recommendation by the U.S. Preventive Services Task Force, which examines evidence on the effectiveness of clinical preventive measures. It said men should not be tested, regardless of age, because the harms outweigh the benefits. In an emailed statement, task force chairman Dr. Albert Siu said the recommendation may be updated in five to seven years after a review of new studies.

Brooks said he believes that recommendation was the pendulum swinging too far in the opposite direction after PSA screening initially led to overtreatment.

“We started to use the results aggressively without thinking of the negative consequences,” he said. “There are many instances of men who would have been better off if they were never diagnosed because their cancer is slow-growing. They’d die and not know they had it.

“But I think, personally, that urologists thought they were doing the best for their patients. Death from prostate cancer can be an ugly, painful thing, and they didn’t want to see their men suffer. The idea that money was behind it is just not true,” Brooks said.

It doesn’t help that the PSA test, while simple and inexpensive, often is inaccurate, showing elevated levels that might indicate cancer but also can be due to medicines or inflammation. The opposite also is possible: that no elevation is evident when cancer is present and particularly virulent. Fast-growing cancer cells may not produce as much PSA.

Rather than rush to biopsy, as Tayson did, or even surgery, more physicians suggest tracking PSA over time. “Active surveillance” means repeated tests of blood and urine for other cancer markers, MRIs for suspicious areas of the prostate and, more recently, a look for other compounds in the body that dogs are trained to sniff out as being associated with cancer, Brooks said.

Active surveillance is an alternative to surgery or radiation after cancer is diagnosed. Another option, “watchful waiting,” applies to men whose PSA levels may be elevated even though no cancer has been found.

“It’s still somewhat an art and not a science,” Karnes said of advising patients what course to follow.

Karnes does not foresee a new test replacing PSA any time soon. But new treatments are an active area of research; Brooks points to imaging and robotics that help surgeons better pinpoint cancerous areas and avoid tissues and nerves that can lead to bowel, urinary and sexual problems. Imaging also is aiding radiologists in targeting tumors, and the latest therapy, mostly with other cancers, involves proton beams designed to activate only when reaching diseased cells, he said.

These developments are encouraging to Sherry Galloway, of Santa Fe, N.M., whose husband had his prostate removed at age 50 and whose son died of prostate cancer at 36. She is a board member of the nonprofit Zero – The End to Prostate Cancer, which raises money for research and provides information.

Her husband, she said, had a slightly elevated PSA when he was 48, but it rose to 8 in two years. A prostatectomy was chosen because “we wanted him alive.”

Her son’s young age contributed to doctors initially not considering prostate cancer when he was suffering from intense hip and bone pain. A PSA was ordered only after no cause for the symptoms was found. The PSA was 441.

Galloway, a registered nurse, advocates a PSA test at age 21 and then at five-year intervals. “Not to screen before age 50 is murderous,” she said.

Much has been accomplished in the eight years since her son died, she said, with much more to do.

“I was very despondent. Working with Zero gave me a place to pay forward his life and keeps him alive for me,” Galloway said. “I fight because one of the last things he asked was for me to help find a cure for prostate cancer.”

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